Living with Chronic Pain: The Daily Struggle with a ‘New Self’

A new study, funded by the National Institute for Health Research Health Services and Delivery Research (HS&DR) Programme, systematically searches for, and makes sense of, the growing body of qualitative research on musculoskeletal pain to help understand the experiences of patients suffering from chronic pain.

A number of concerning themes arose from the study:

• Patients struggling with the fundamental relationship with their body, and a sense that it is no longer ‘the real me’.

• A loss of certainty for the future, and being constantly aware of the restrictions of their body.

• Feeling lost in the health care system; feeling as though there is no answer to their pain.

• Finding it impossible to ‘prove’ their pain; “if I appear ‘too sick’ or ‘not sick enough’ then no one will believe me”

Kate Seers, Professor of Health Research at Warwick Medical School and Director of the Royal College of Nursing Research Institute, was a collaborator on this study. She explains, “Being able to collate this vast amount of information from patients paints a worrying picture about the experiences they have with chronic non-malignant pain. Our goal has to be to use this information to improve our understanding of their condition and, consequently, the quality of care we can provide.”

“Having patients feel that they have to legitimise their pain, and the sense that doctors might not believe them, is something that should really concern us as health care professionals.”

The study also identified a number of ways in which patients can move forward with their lives. The key for some people appears to be building a new relationship with the body and redefining what is ‘normal’, rather than trying to maintain the lifestyle before the pain. Developing an understanding of what the body is capable of and becoming confident to make choices can aid the process of living with musculoskeletal pain.

Francine Toye, of Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, explains: “This paper shows there can be value in discussing the condition with other people who are going through the same experience and knowing that you are not alone. Of course you can learn about your condition from various sources, but sharing your experience seems to really help people to move forward.”